I'm having a hard time with Lucy. Coming to the hospital is getting harder and harder. She's fighting though which gives me the strength to fight too. It seems like anytime anyone talks to us we get bad news. Today one of the nurse practitioners came in and said, "we need to talk." I felt sick. "Do you realize your daughter is wearing skulls on her shirt?" Needless to say I was pretty relieved.
Lucy is wanting to sit up and crawl but her CPAP makes it difficult.
Hazel misses sissy.
Jack gets jealous when I forget to take pictures of him.
Lucy had a bronchoscopy this week. I don't even remember what day. The were hoping they'd find a bunch of mucus to suck out and hopefully help her get off CPAP. They didn't. They found that Lucy's bronchi are really narrowed and that everything in her lungs was a little enflamed. In the last week Lucy has made almost no progress coming off CPAP until today. They are planning on doing everything really slowly with her.
I also had a talk with cardiology this week. They've been wanting to push forward Lucy's cardiac cath. They even rescheduled other patients to get her on the schedule for tomorrow but Lucy's surgeon didn't feel like it was safe. She's only 2 1/2 weeks post op and if they decided to put a stent in during a cardiac cath it could tear where the surgeon worked before. Which would be catastrophic for Lucy. We're trying not to look too far ahead but it's hard not to. Lucy is still in heart failure and could remain so for months. This week was the first time anyone has talked to us about a possible heart transplant for the future. We still have no idea when we'll be going home.